Ladies I've Got Fantastic News

[Ninabike]

Python, that is such wonderful news!! All the best to you, your son and your brother.

[jeannierides]

Wonderful news, for sure!

[Tri Girl]

Wow- that's fantastic news!!! Please keep us updated as everything progresses!!!

[sbctwin]

Good news, indead. What a wonderful gift your brother is giving.

[Jenn]

Oh it is SO nice to finally read or hear about something good and positive happening!! What a TRUE blessing that is. Your brother is an amazing person!

[Python]

My brother is a wonderful, caring person. Best brother and Uncle in the world

We have a kidney disease called Alports Syndrome which runs in our family on my mother's side. It's a genetic hereditary disease. Unbeknown to me, I inherited the bad gene and passed it onto my son. It's a disease that hits the males much harder than females. Most females don't even know they've got it. Some, like my grandmother go on to full kidney failure. She died in 1934 because of it. We knew she died of kidney failure but didn't know what had caused it and had no idea it was hereditary. Of course, in 1934 there was no dialysis or transplants, so she died at the relatively young age of 55.

My brother inherited the good gene so he doesn't have the disease. Unfortunately Ian has full-blown Alports. The disease also causes eye and ear problems (why I wear specs). Ian is also deaf and wears hearing aids. He's also very short-sighted. Basically, what Alports is, is a collagen is completely missing from our DNA structure. That collagen is the one that forms the tissue for the kidneys, ears and eyes, so the filters of the kidney eventually end up looking like a frayed rag with holes in it, the ears gradually go deaf (total deafness eventually is not uncommon, Ian has about 20% hearing in his "good" ear) and the lens of the eyes are mishapen, hence I'm very long-sighted and Ian is very short-sighted. It also damages the peripheral nerves so Alports people often suffer from Reynauds disease as well - one of the reasons I hate getting cold.

The kidneys fail over a period of time. We first knew there was a problem when Ian started passing blood in his urine at the age of 11 months. The deafness started to show at about 2 years old and gradually got worse so that by the time Ian was 10 he was quite deaf. At 15 his kidneys completely failed and he's been on dialysis all this time. He never complains and tries very hard to lead as normal a life as possible between dialysis sessions - even coming out on his bike with me although we don't go too far as he tires easily.

We're really hoping things go well as Ian's never known what it feels like to be healthy.

My kidneys could fail too and I do know, although they work, they're not 100% and that's why I couldn't be a donor for Ian which was a pity as I would have been the best match. This placed the hospital in a bit of a dilema. Their reasoning was if my kidneys failed then my brother would be an excellent match for me. My reasoning was let Ian have my brother's kidney as there was no guarantee mine would fail and I've at least had something of a life. It was a bridge I would cross if it ever happened. Fingers crossed that it doesn't.

Ian is still very young (only 20) and deserves to lead a normal life and thanks to my brother he may get that soon

[cosc]

What great news to rejoice over. I will keep you, brother and son in my prayers.

[Mr. Bloom]

I didn't know about that, but it sounds like a wonderful blessing!

[Zen]

That's one lucky boy and one wonderful brother. Dialysis must be an awful hinderance to a normal childhood. If only more people were willing donors.

What does it say on YOUR drivers license?

[SouthernBelle]

Fantastic is not suffcient. Keep us updated!

[madscot13]

best wishes to your son and brother. It takes courage to voluntarily undergo a surgery that leaves you without an organ and courage to live with such a difficult disease. May this bring ease to your son and to your family's worries.

[Python]

If only more people were willing donors.

What does it say on YOUR drivers license?

I carry a Donor Card. Although I can't donate my kidneys to anyone there are lots of other bits and pieces of me that could help bring normal life to someone